<<Disclaimer: Verify this information before applying it to your situation.>>

Dear listmates,

Thanks so much to all who those who replied to my inquiry. To recap, my son
has IgA Deficiency as well as Celiac Dx so that the standard TTG-IgA testing
is not helpful and the alternate TTG-IgG keeps coming in above threshold,
suggesting we are not succeeding at gf diet even though we are extremely
careful.  Also, I know my son would never cheat as he has immediate,
embarrassing diarrhea with exposure to the smallest crumb, and he is always
quizzing me and anyone who offers him food to verify gf, routinely turning
down anything that is doubtful.

 

FYI, we ended up getting the anti-Deamidate Gliadin Peptide IgG  test as
suggested below and that one came back "NORMAL".  We also had a repeat
endoscopy/biopsies which also was consistent with succeeding at gf diet.  So
our GI doc said his elevated TTG-IgG test results are considered one of the
rare cases of "false positive".

 

List of responses are below.  

 

While in theory those who are IgA deficient should be monitored with
TTG-IgG, indeed there is no published data to show that. Additionally,
TTG-IgG are known to be less reliable in general. So my advice would be to
rely on periodical determination of anti-Deamidate

Gliadin Peptides in the IgG subclass (DGP-IgG).

 

Stefano Guandalini, MD

Professor and Chief,

Section of Pediatric Gastroenterology

University of Chicago

 

I have both as well & always have blood test that say I am "getting gluten"
I think a repeat biopsy every so often is the only real way to monitor the
condition,

 

There is building evidence that grains normally considered gluten free have
proteins with similar enough structures that some Celiacs respond to them at
a lower level than 'real' gluten.  This is true of oats in particular, but
even quinoa, rice, corn, etc may be able to do some small level of damage.
You might try a grain free diet for a couple months (look up
Paleo/Primal/Four Hour Body diet sites

 

In the days before there was a tTg-IgG, they just did AGA-IgG (Anti-Gliadin
Antibody). That was in the late 90's, when support groups were holding blood
screenings for the prevalence study.

 

In asking questions about the tests from the lab supervisor at U/Maryland, I
was told that the IgA antibodies were like a snap shot of recent gluten
encounters--They went up quickly when exposed to gluten but would also
resolve in 6 weeks or so without additional gluten. 

 

The IgG antibodies were the long term history, the indicator of chronic
exposure over a long period of time . A single gluten hit wouldn't cause an
immediate rise as it would for the IgA but it would also take much longer
for the IgG to return to normal levels. 

 

Since doctor doesn't know how to interpret the tTg-IgG, maybe they should
run a AGA-IgG since that should  look specificall for gluten exposure. The
body can make IgG antibodies not just to gluten, but also to other proteins
like milk, soy, etc.  I'd want to make sure that the elevated number is to
gluten & not total IgG which could be caused by other food intolerances.

 

Also, how old is your son?   By the time kids are 7 & older, they are
supposed to be making enough IgA antibodies to register on celiac tests. My
granddaughter was caught by a serendipitious screening when she was 8.  Her
tTg-IgA test were negative but her EMA was positive, along with the AGA-IgA.
Thankfully her doctor had tested using a full celiac panel or the dx (& also
that of her mom) would have been missed since she (& mom) had no obvious
symptoms/problems to suggest celiac, other than 3 generations of celiac in
the extended family. 

 

A couple of people in our group have had problem with elevated antibodies &
it was eventually traced back to their thyroid meds. Ingredients were
changed and no one noticed. Amount of gluten was very small but taken daily
so symptoms were mild/chronic, rather than severe/obvious.   That's the kind
of long term exposure that would have affect 'history.'  

 

And I spoke to a lady yesteday at a celiac awareness thing who's
son--probably 9-12 age, was having intermittent problems. They finally
figured out he was trading lunch with class makes at school, basically  NOT
eating GF becaus he wanted to be  like the other kids.  

 

I am sure you will get responses from people who understand test results.

I just wanted to add my 2 cents.  I have been gf for 25 years.  The only
time I have had biopsies is if there is another issues where I need an
endoscopy.  I know I am gf and know if I slip up which is never now that it
has been so long.  I am just saying I do not have drs monitor it.  I do.

 

I am celiac and have a celiac friend who for years got out of whack IgG
tests back...until she got fed up and sent the next test to a highly
reputable lab out of state.

That ended the out of whack tests and her frantic efforts...(plus they did
the whole pyramid/cascade/protocol of tests that Mayo and other places have
put out there...)

 

We have a similar situation.  My son, who just turned 11, is currently in
5th grade.  He was diagnosed with Celiac in 1st grade and has been on a
strict, gf diet.  His numbers started out over 45 then gradually decreased
until they were around 14.  Our doctor said she would like to keep them
under 10.  All of a sudden, last January, his numbers shot up to 65.  We
were alarmed because we do not cheat on this diet or cross contaminate in
any way shape or form.  We could only assume it must have been from a
restaurant where we had eaten recently.  We just had another appointment and
his numbers are at 46.5.  I am happy they are going in the right direction,
but I am also concerned that they are still higher than when he was first
diagnosed.  It is very confusing b/c all of his other blood work has come
back normal.  I am wondering if something else besides hidden gluten has
caused this increase?  Also, my son has had inflammation and other
auto-immune issues in the past - Kawasaki disease at age four, asthma,
vitiligo, etc.  

 

May I ask if your son has Downs Syndrome?  Kids with DS have a hard time
getting their blood tests to return to normal.

Did they have a dairy intolerance test ran on him?  It will react just like
a gluten reaction, but no damage is being done to the intestines.

 

 


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